Severe neck pain, muscle spasms , jaw pain, difficulty swallowing

Posted by mckinney2020 @mckinney2020, Aug 7 10:57pm

My son is 8 years old. I don't really remember how it started but one day after he went to " Urbina Air “for a friend birthday he had a fever at night and symptoms like fu. I though its COVID and I tested him but he was negative so I gave him Tylenol " just for one time). Next day in the morning he woke up and the fever gone and he was fine. One day later he started to complain from his neck. At the beginning I didn't pay much attention. I thought he slept wrong and it was something temporary. Two days later when he continued with the pain, I took him to urgent care. They couldn't find anything wrong with him. One day later I took him to the emergency room. They did CT on the neck to rule out infections and abscess. They found out: Prominence of the adenoid and palatine tonsils. Prominent level 2 lymph nodes bilaterally measuring up to 9 mm short axis are favored reactive.
They gave him antibiotics and said in two days he should feel better and to continue following up with ENT. A week passed and he still didn't feel well. When we went to the ENT she said she doesn't know what is wrong with him and she asked to take him back to the ER . We went back and this time we got admitted for two days. They did an MRI and changed the antibiotics and gave him painkillers and one dose of steroid. He felt great with the pain killers ( IV) and the steroids. The MRI showed the following: Mildly enlarged lymph nodes in neck. there is asymmetric prominence of the right lateral retropharyngeal lymph node. The tonsils are also middy enlarged. No collection or mass lenition is identified. Everything else was fine
We got discharged from the hospital and he was fine for just two days then the pain came back again and has been going continuously for more than two months now.
He currently has severe neck pain with trigger points at the back of his neck and severe neck stiffness and swelling around his neck. He also gets a headache that starts from the base of his neck and travel to the head from front and pain in his ears. His head tilted forward and his throat mules get very very tight to the point he get chock while eating and can't talk or open his mouse widely.
He feels better in the morning when he wakes up or when he lay down only.
We went to ENT, neurologist, orthopedic, and pain management and PT. No one knows why he has these symptoms I really don't know what to do. Our life turned upside down and he became completely homebound. He only goes to doctors for medical appointments and PT 3 times a week. Any idea what is this could be

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@mckinney2020 – Welcome to Mayo Clinic Connect!
I’m so sorry to hear what your son has been going through. You must be extremely worried not having an answer after all this time.
May I ask if the neurologist and ENT were specifically Pediatric?
Was he only given one dose of steroids? That’s probably why he felt better for a couple of days. Steroids helps shrink the swollen lymph nodes.
Was he tested for mono? EBV titers? It sounds similar to an acute mono illness.
Did they tell you if he had normal blood counts?
How often does he see his pediatrician? Are his blood tests repeated on a regular basis?
Did the MRI also include his head/ brain?
Since he started out with fever it seems likely that he had an infection.
It may be helpful to have an Infectious Disease consult.
I’m asking a lot of questions!
Don’t give up asking for answers now after a couple of months- he should be re-evaluated on a regular basis.
Please keep posting- it gives others a chance to share their experiences with similar illnesses.

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Thank you so much for your response. Please ask as many questions as you want . It may guide me to the right direction. All the doctors we visited are for pediatric and they are all affiliated with children medical center Dallas and Plano . We are planning to go next week to another pediatrician ENT because his current ENT doesn't know why he has all these symptoms and she is the one who is suggesting seeing a different ENT. When we went to the ER first time they didn't test him for mono but a week later when we got hospitalized they tested him and he was negative. All his blood counts were normal expect for ESR and CRP were slightly high . We did MRI on the brain and it came back normal. His Neurologist suggested Pain management specialist because he doesn't want to see him again. So I am planning to take him to another neurologist for a sconed opinion but this is in October. He is also schedule to see rheumatologist in OCT . I will schedule him for Infectious Disease consult I just hope that it is not going to take months.

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@mckinney2020 – It is great to hear that you have access to Pediatric specialists. Also, I’m glad that you will get 2 nd opinions in ENT and Neurology.
Can your Pediatrician assist in getting an Infectious Disease consult?
It is often helpful to repeat labs on a regular basis- especially since we seem to be dealing with an infectious/ inflammatory condition.

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Hello @mckinney2020. I'd like to add my welcome along with @astaingegerdm. It is so good that you are reaching out for support as you go through this with your son. I can imagine how difficult this is on so many fronts.

I noticed you posted this in both the Kids and ENT group so I have updated this post to be visible in those two groups as well as the Spine group and removed the duplicate posting to simplify responses.

I second what @astaingegerdm has shared with regard to being happy to hear you have access to pediatric physicians. That said, I am not sure if the added element of a teaching hospital and one where a multi-disciplinary approach would be even more beneficial to you. Having specialists working together across departments can really be a game-changer in terms of the level of connected care someone can expect, rather than acting as the middle person in translating back and forth. That may be something to consider if you aren't making progress.

Additionally, I wonder if anyone has brought up testing for Lyme's Disease? What about spine issues specifically given the irregular head tilting you described?

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@mckinney2020 – I just looked up your Children’s Hospital online. I’m very impressed with the number of Pediatric specialists that are associated with the hospital!
I see they have Pediatric Infectious Disease physicians too. I hope that you can get an appointment with one of them in the near future.

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@mckinney2020

Thank you so much for your response. Please ask as many questions as you want . It may guide me to the right direction. All the doctors we visited are for pediatric and they are all affiliated with children medical center Dallas and Plano . We are planning to go next week to another pediatrician ENT because his current ENT doesn't know why he has all these symptoms and she is the one who is suggesting seeing a different ENT. When we went to the ER first time they didn't test him for mono but a week later when we got hospitalized they tested him and he was negative. All his blood counts were normal expect for ESR and CRP were slightly high . We did MRI on the brain and it came back normal. His Neurologist suggested Pain management specialist because he doesn't want to see him again. So I am planning to take him to another neurologist for a sconed opinion but this is in October. He is also schedule to see rheumatologist in OCT . I will schedule him for Infectious Disease consult I just hope that it is not going to take months.

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October is a bit away in terms of time. If you haven't done so, ask to be put on the wait list for notification of any open appointments. Patients cancel appointments, frequently, for myriad reasons. Also call the doctor's office manager 1-2 times a week to see where you are on the wait list. I was able to see a specialist who was fully booked for several months because a patient canceled an appointment for the following day only a few minutes earlier.

Another suggestion is to find out when the doctors" office staff call patients to confirm their appointments. A lot of people forget they're on a wait list and go elsewhere so office staff frequently fund out about schedule openings at that time.

Doing the above helps create a kind of relationship with doctors' office staff and become a person they start to know. Which is always a good thing. I've found more workarounds in terms of expediting things with doctors because the nurse and office staff like me and have run interference for me. And the fact that you continue to check on openings means that you are not likely to cancel or 'fail to show' for an appointment yourself. .

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One additional thought…
Could your son have hurt his neck in any way and the polyps be unrelated? It could be something simple and not even remembered. I was in a cramped tent when camping once and ended up with a pulled neck muscle and intermittent tingling and numbness in my arm. Saw a lot of doctors before a neurologist asked questions and we pinpointed the cause as sleeping on that arm in an uncomfortable position that hyper extended the nerve. He said it would likely self correct over time and it did but took a few years. And nothing showed up on MRI or CT scan so the diagnosis needed a medical detective to ask the right questions. Again, this is just a thought and maybe some insignificant thing started a domino effect?

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@callalloo

October is a bit away in terms of time. If you haven't done so, ask to be put on the wait list for notification of any open appointments. Patients cancel appointments, frequently, for myriad reasons. Also call the doctor's office manager 1-2 times a week to see where you are on the wait list. I was able to see a specialist who was fully booked for several months because a patient canceled an appointment for the following day only a few minutes earlier.

Another suggestion is to find out when the doctors" office staff call patients to confirm their appointments. A lot of people forget they're on a wait list and go elsewhere so office staff frequently fund out about schedule openings at that time.

Doing the above helps create a kind of relationship with doctors' office staff and become a person they start to know. Which is always a good thing. I've found more workarounds in terms of expediting things with doctors because the nurse and office staff like me and have run interference for me. And the fact that you continue to check on openings means that you are not likely to cancel or 'fail to show' for an appointment yourself. .

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@callalloo Excellent advice! I always say, "a closed mouth doesn't get fed".

Build a connection, follow through and follow up….dont wait for them to come to you, go to them. It's easy to become just another number and blend in and that's fine if there's no major concern or sense of urgency. Being firm but fair, and friendly, has its benefits.

Your tips are very helpful and are exactly how I advocate for myself and my loved ones who aren't always able to advocate for themselves. Thanks for sharing!

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